Our daughter has gyrate atrophy. We are encouraged by the rapid pace of research in gene therapy and stem cell replacement. We started Conquering Gyrate Atrophy to weave together a community focused on finding a cure. This community includes patients, families and loved ones affected by the disease as well as researchers working on a wide range of topics relevant to gyrate atrophy. We fund research, support collaboration, and share learning and to accelerate research and treatment for gyrate atrophy.
Catalyze and support the most promising research
Support patients and families to influence and participate in research
Share results among patients, families and researchers
Stories of People Living with Gyrate Atrophy...
D. It started on Halloween... when our 4 year old daughter D. kept tripping and stumbling as she went from house to house to trick-or-treat after dark. Her pediatrician and ophthalmologist assured us this was nothing to worry about. When she was 16, during a routine eye exam, the optometrist found dark patches on her retina which was later confirmed as gyrate atrophy. Now a young adult, she eats a vegetarian diet (which has helped) and she lives a full life. One of the hardest parts of living with gyrate atrophy is the anxiety and anticipation of what might happen. She recently learned that she can no longer drive due to her poor peripheral vision. She has had some bad falls at night and may need to begin using a cane. Gyrate atrophy is a slow moving train; we plan to be faster.
Photo Credit: Melissa Stottmann
Graciela My name is Graciela I am 24 years old and I’m from Mexico. I would love to share my story with you. When I was 6 years old I started to realize that I could not see at night. Later on I felt “Tunnel vision” then I decided to go with the eye doctor who diagnosed me with “Gyrate Atrophy”. He told me that there is no solution and there’s no one who can give a treatment. Unfortunately it got worse at 17 years old because they detected cataracts and a few years later “cytoide macular edema” appeared. I decided to study medicine and during my training I started a deep research about this disease where I found that there is a treatment [the diet] that can stop visual loss. Right now my vision loss is stopped and I have the dream to become a great doctor even with my illness and find the cure.
My name is Sean and I am 37 years old. I had glasses for most of my life and I was diagnosed with Gyrate Atrophy when I was 12 years old. My mother was my biggest advocate and did a lot of research and networking about Gyrate (pre internet). She was very good at providing a low protein diet, which helped slow down the vision changes. About 4 years ago, I developed cataracts and last year I developed strabismus (eye turning). I still have good central vision but poor side vision and night vision. This is a tough diagnosis to receive as a patient and navigating the changes to your vision. But I believe it makes me more grateful for each moment and helped instill a desire to live my life to fullest. I work in solar energy and passionate about stopping climate change. I am grateful for this organization to help connect gyrate patients and families and increase visibility and research in Gyrate Atrophy.
I was diagnosed when I was 12 years old in 2015. At first, I really struggled with coping it and I couldn’t come to terms with it until 2020. It made me feel less normal than any other regular kid. In 2019, I started training to become a Personal Trainer and in 2021 I am close to finishing it. And in 2021 at the moment, we are in our last lockdown and I have taught myself how to cook catering to my diet. I love it so much and it’s genuinely made me so much happier and healthier. When I ate normal food before I didn’t enjoy it because I was feeling guilty. Recently, I have started a fitness Instagram called @healthytimeswithkat which I love doing. And in September 2021, I’m going to University to study Psychology.
We currently live in Abu Dhabi and are blessed with 2 lovely daughters. Both of them have been prescribed spectacles since the age of 3 due to poor vision. One fine day my younger daughter at the age of 9 complained of blurred vision and was diagnosed to have a vitreous hemorrhage. Since she was too small, the doctors were not in favour of a surgery and let it clear in the normal course which took about a year. This triggered the doctors at Moorfields Dubai to check my older daughter's eyes too. After a series of tests, both my girls have been diagnosed with Gyrate Atrophy. My younger daughter Nikita aged 11 has weak blood vessels as a result of which she keeps complaining of blurred vision. My older daughter Amber aged 16 has mild cataract which we check every 6 months to ensure she does not need to be operated just yet.
I found out I had GA when I was 12 in 1998, since I was little I was extremely short sighted but it was not until my older brother went to see the optician and they said we need to refer him to specialists. He found out he had GA, he was 14 and then me and my younger brother got tested and found out I had it and he is. My youngest 4th brother was diagnosed when he was 8 so 3 out of 4 of us have it. The diet was extremely difficult as we were on 7g of protein per day when my parents had control of our diet our levels were quite low and then as we’ve got older I don’t follow the diet strictly as it is extremely difficult but I’m doing really well. I’m working full-time, run a business, have a 4 year old so managing well. I’ve had cataracts in both eyes and had that removed which has helped significantly. Can’t wait to see what the future holds with nee treatments being available, it has been a long time coming.
This is Fabricio, 44, from Buenos Aires, Argentina and I have GA. In 2009 I was diagnosed with hign level of ornithine. I take pyridoxine and creatine daily. As a child sunlight bothered me. I had cataract surgery in 2007 and 2008. In 2014, an OCT scan showed macular edema. I studied journalism and psychology and I work at the National Institute of Agricultural Technology as the administrative secretary. In 2013 I got a certificate of disability which helps to cover expenses for glasses and medication and I have a green cane. I have tried reiki, alternative therapies, yoga, and acupuncture, as a way to bring more energy. The low protein diet has been difficult to follow. This year I went back to the recommendations of my nutritionist and redid my diet with low protein components.
And so many more stories of people
affected by gyrate atrophy...
We don't know all the people affected by this disease. It is difficult to diagnose. If you'd like to share your story here, contact us at email@example.com.